Tuesday, September 27, 2011

Time for news! Our subjects this week are Chronic Pain, Cancer, Lyme Disease, and Fibromyalgia. The last category is Living With Chronic Pain and I’ve selected a piece by Jan Sadler from her PainSupportUK newsletter about not allowing your pain to put your life on hold.

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below.

WARNING: My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, meds, in anything I post nor can I guarantee that they are all effective, especially not for everyone. I always include the citation, source, or website so you know where it came from. As is the case with any health info, ALWAYS get your doctor's opinion first!

Saturday, September 24, 2011

While doing research this week, I came across an article that deeply saddened me. It was about a 19-year old college student who appears to have died from using her asthma inhaler and epinephrine injector pen too many times on the day of her death. You can read the article HERE.

It’s a terrible shame for someone to die by use of the medications which help them to live a good life. Although the student’s death is still under investigation I couldn’t stop thinking about how easy it could be, as someone who takes powerful medication for chronic illness, to take too much by accident.

I’ve never taken too much, but I have had days where I was so distracted or suffering that I have entirely forgotten to take my pills. I can imagine if I was having a really terrible pain day and was out of my normal routine, outside of my home, suffering and frantic, I might possibly forget how many pills I had taken. All the more reason to plan ahead and protect yourself from making such a deadly mistake.

~* HOW PROTECT YOURSELF FROM ACCIDENTAL OVERUSE *~

1.) Carefully discuss dosage with your doctor - and take notes

Be sure you understand your medication dosing schedule, whether you are using pills, injections, inhalers, patches, creams, drops, etc. Write down what your doctor says is the maximum dosage you are allowed to take. Ask what you should do if you are approaching your maximum allowed dosage but your symptoms are continuing to rage out of control: should you switch to a different (emergency control) medication, should you call the doctor’s office, should you go to an emergency room for evaluation, etc...?

Additionally, you ought to discuss what to do if you realize you actually have exceeded the dosage amount by accident. And don’t forget to ask if your meds could react badly when combined with other substances, like particular food items or over-the-counter medications. (I've written a previous post about drug interactions and how to avoid them, as well as other aspects of Medication Safety. See the links at the end of this post)*

2.) Keep track of your medications daily - especially on bad days

Once a week, I put my meds into daily pillboxes so I can keep them with me each day and I know what I have to take and I can check if I’ve think I’ve missed one. There are all kinds of pillboxes and medication reminders available for purchase; some even have alarms which alert you to take your pills. Even if you are having a bad day, you’ll know where you started, what base meds you’ve already taken in the day. Here’s a form from the Mayo Clinic to use: Current Medications Log

3.) Use a Patient Journal

As a patient with chronic pain/illness, you ought to be keeping a journal (either handwritten or typed on a computer or other electronic device). This journal is tool for you to keep a record of when symptoms are flaring, new symptoms are occurring, or to note any changes in your condition or the effect of meds or treatment upon you at the time they happen. This is valuable information to share with your doctors on a regular basis, but it can also assist you in following recurrences of symptom flare-ups and judging how the steps you took in reacting were or were not successful. Information recorded in the moment can lead to altering your meds/treatment to better prevent flare-ups and help track the overall course of your chronic condition.

From my own garden: Dahlia "Moonshadow"

4.) Explore new technologies for tracking your meds / symptoms

New technologies are so handy for keeping a daily record of your condition. Laptops, Blackberries, iPads, iPhones, etc. all offer convenience for constant tracking. When you have an extreme symptom day and are using a lot of medication, an electronic device could be the ultimate way to make a quick note, no matter where you are and without hardly any effort, of exactly when, what, and how much of your relief drug you have taken. It makes it equally easy - and almost instantaneous - to know with a few keystrokes exactly where you are with your total dosage for the day.

I am not a techie person, but with a quick online search I found two options you could use for this step. MedTracker 1.0 is an app for the iPhone and My Medication Tracker is a free software tool. If you know of another app or program, please write in the comment area below and tell us about it!

5.) Tell Someone when your symptoms become extreme

When I’m having a rough day and my chronic pain is climbing out of control, I always make sure that my husband knows. Sometimes we want to hide when we are struggling and cover up how desperate we feel. However, we have to be honest if things are getting out of control.

If you are having a truly extreme symptom flare, you really need to tell a friend or loved one. An impartial observer might notice if you are acting unusually or if exhibiting abnormal symptoms that you might be be aware of. You might not notice if your lips or fingertips are turning blue, if you begin to act irrationally, if you start to hyperventilate, if your overall color changes, if you seize, if you get spaced out, if you become unresponsive or any potential warning sign you might miss. Keeping secret your worsening condition could risk your life.

These five steps could prevent an accidental tragedy. Please read them and pass this post on to others with chronic conditions!

...more suggestions:

Several months ago I wrote a 3-part series on Medication Safety which can also keep you and your family safe. You can read each section by clicking below:

Tuesday, September 20, 2011

Lots to share this week for Tuesday-Newsday. I have articles on Chronic Pain and Pain Rx. I also have a collection of Miscellaneous Articles with news on different pain conditions. The final item is Living With Chronic Pain and the article is entitled, “Sue and the Seven Dwarfs of Chronic Pain. I really like this piece by Sue Falkner-Wood; it’s right on the money about living with pain with a little dose of humor added.

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below.

WARNING: My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, meds, etc. in anything I post nor can I guarantee that they are all effective for everyone. I always include the citation, source, or website so you know where it came from. As is the case with any health info, ALWAYS get your doctor's opinion first!

Saturday, September 17, 2011

Today I want to share with you an intriguing documentary called 'The Secret World of Pain'. This four-part film explores the mysteries of pain with a scientific emphasis. By visiting people with particular types of pain, the film breaks down what makes pain a different experience for each of us - even if the pain stimulus is exactly the same.

By looking more deeply into how our perception of pain is shaped by our specific genes, brain processing, physical development, emotions, and life experience -- the film provides a great deal of insight into our own lives.

The most exciting part of this documentary was a peek into the research being done to manage and (hopefully) cure pain in the future. The final segment about a women in chronic pain after a stroke was extremely moving, showing how she received a brand new treatment which was successful. I was crying along with her as I watched her discover relief for the first time in five years.

I now have a much better understanding about how pain is felt in the body and perceived in brain and particularly how feelings like anxiety, anticipation, and fear affect my own pain levels. After watching the documentary, I have a greater sense of hope that treatments and medications now being developed will bring relief for all of us!

'The Secret World of Pain' is approximately one hour in length, but well-worth spending the time to watch. If it does not play through this link, you can enter the title into YouTube and find all four segments available.

I hope you will take the time to watch this educational and truly promising film!

Tuesday, September 13, 2011

Here's what I collected from the news this week! The pain condition I found the most articles on is Migraines/Headaches. The last item is a link to an educational booklet from the American Pain Foundation which features information on how to better manage your chronic pain.

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below.

WARNING: My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, meds, etc. in anything I post nor can I guarantee that they are all effective, especially not for everyone. I always include the citation, source, or website so you know where it came from. ALWAYS get your doctor's opinion first!

The Affordable Care Act requires all health insurance providers offer coverage for pre-existing medical conditions by 2014. Until then you can purchase insurance via the Pre-Existing Condition Insurance Plan (PCIP). You will not pay a higher premium and eligibility is not based on income. The program is only open to those who have been without insurance coverage for the last six months. Learn more HERE

Social Security's BOND program could help you keep more of your SSDI benefits while working

The Benefit Offset National Demonstration (BOND) is a new program created to help SSDI beneficiaries return to work or work more hours, if they are able. BOND could help you earn a bigger paycheck and keep more of your SSDI benefits than would currently be possible. The program will test whether this incentive will encourage a greater number of workers with disabilities to return to gainful employment. To learn if you are eligible or for more information go HERE

The iManageMigraine App is designed to help you monitor migraine patterns, frequency and symptoms that can be shared directly with your doctor or printed out for your next visit. The app also offers hints and tips to support you. Download HERE

Friday, September 9, 2011

[ChronicBabe.com is hosting a blog carnival with the theme: "Let's get spiritual: Faith, religion & chronic illness”. I wanted to join in and add my voice, and this blog post was selected for inclusion! You can access the blog carnival and read all the posts HERE]

Living with chronic illness is a tremendous drain on the facets of our deepest being: our emotions, identity, psyche, and self-worth. In order to move forward in life we have to accept the illness we have and completely reshape those facets, redefine who we are so we can face a new future.

When struggling with serious issues like this, some people use religion to find guidance and comfort when facing the unknown. I was raised in a family that went to church every week and I always considered myself a spiritual person but not a ‘religious’ one. I belong to a church but don’t attend weekly; my spirituality is turned more inward and private, less steeped in ritual and outward activity. However, when I first became ill I did not find solace in any aspect of my religion or spirituality.

The onset of the chronic phase of my condition hit me with a suddenness which altered my life in a snap, literally. One minute I was an average 27 year old. The next minute, I could barely walk after badly dislocating my hip and the descent into chronic pain, disability, and depression began.

Months of tests yielded no diagnosis, which only added to my fears and self-doubt. I lost more mobility and felt guilty for not being able to work. I stopped eating and became anorexic. I was even hospitalized several times for being suicidal. I was in a living hell and I couldn’t see any future beyond the dark hole which was consuming me.

I couldn’t seem to find any comfort in my faith. I wanted to feel connected to something, to believe all would be well, and to find peace. But I just felt empty. I didn’t blame God; in a strange way, I was blaming my body as if it was a third person and using the eating disorder as a bizarre sort of punishment toward it. I felt like my mind and my body were completely separated, different entities forced to live locked in a war which I couldn’t see having a positive end. I was disconnected from every facet of myself and internally flailing about with no hope.

From my garden: Dahlia ' Razzmatazz ' on a Canna leaf.

At last I was diagnosed with a degenerative genetic collagen disorder and started to get my severe chronic pain treated. Luckily I finally got help to beat the eating disorder, and began to get the intense psychological therapy I needed to finally pull the two parts of myself back together and face the future I didn’t think I could accept.

Did my I loose my spirituality? Through all my dark struggle I never found consolation in prayer or succor from any of the religious support around me. However, as I began to find the help I needed to deal with all my problems, my faith was renewed by the people who came into my life when I needed them most.

When I needed treatment for anorexia, an offhand comment someone overheard while I was in physical therapy led me to getting referred to a psychiatrist who literally saved me. I was assigned a psych case manager who moved HMO mountains and was there whenever I needed her. I read a book someone gave me while hospitalized and was so moved I located the author who actually lived nearby, a therapist with Multiple Sclerosis, and joined her chronic illness therapy group. I was referred to a chronic pain support group and met a man who had far more pain and disability than I, who inspired me with his marvelous outlook on life and who helped lead me back from the edge of giving up.

These are only a few of the amazing people without whom I would not be here today, and certainly not living the life I have now. It cannot be coincidence that these individuals found their way to me. There’s a term I love to use from a book which has truly open my eyes and illuminated my faith: “Godwink”. A Godwink is a messages to you in your life, appearing in the form of coincidences - which are too perfect to be accidental.

The author of the book, SQuire Rushnell, describes it this way:

“I believe every time a coincidence happens, or a prayer is answered, or something makes you want to shout, ‘Wow! What are the coincidences of that happening’? you’ve received a Godwink. It’s a signpost along your path to your destiny – a reassuring message, no matter what your belief in a higher power, that you are never alone."

It’s been a very rough road for me the past few years, but I feel more strongly than ever that God is out there, he’s on my side, and he’s giving me the support and help I need. I can see so many instances now; often they came from very surprising sources and sometimes they sharply turned my life in a direction I never would have gone - but ultimately when I look back, it’s obvious I ended up where I was supposed to be.

Now when I’m having a setback or my degenerative condition gives me new problems, I tell myself to calm down and be watchful. My spiritual experiences so far have me anticipating where my next Godwink will come from. In my renewed faith, I know they are out there!

"A good Garden may have some Weeds."

I like to think of Life as a Garden... with the blossoming flowers as our souls fed by the happiness we cultivate.

Chronic Pain is like a persistent weed that threatens to take over our garden when we have chronic pain/illness.

Although we may not be able to stop the invasion of weeds, we can find ways lessen their impact in our lives: to remove the weeds we can, to obstruct their growth by treating them, or to step over them & choose instead to focus on 'stopping to smell the roses'.

This blog is about living a joyful life despite chronic pain: by being educated on your pain condition, becoming a smart patient, finding inspiration, and then opening yourself up & finding creative ways to experience life.

About Me

I am believed to have Ehlers Danlos Syndrome III - Hypermobility Type, which is a painful genetic disease that affects collagen and connective tissues... but there are some doctors who say I likely have a mutation of EDS or another connective tissue disorder.
I love my husband and my cats!